I want to start out by giving out a few thanks. First of all, I'd like to say
kudos to Karen for putting together the last issue. I was in the
midst of running back and forth to the Intensive Care Unit at the
hospital and couldn't find the time to work on the newsletter.
Thank you Karen! Second, I'd like to say Thank You to all the
members who kept my mailbox full with well wishes. You can't
begin to imagine how that helps when you are going through a hard
time. Hugs to All of You, Jamie

End Stage
Care

End Stage Care is
probably the hardest care of all to give. It is the end. The last
part to go through. It is filled with quiet days of hard work,
needs that are to be met. Your loved one may not be able to
verbalize much of anything. And they may not be able to walk well
either, needing assitence to get back and forth to the bathroom
or other areas of the house. They may be wheel chair or bed
bound. These are the days that none of us look forward to and yet
know that they are coming. There are still things you can do for
your loved one to give them care and to show them your caring. I
honestly believe that people in the later stages know what is
going on around them. Due to the illness they are unable to state
their acknowledgement. Look into their eyes, smile and wait for
the response you get. That is where it will come from. Now is the
time to keep doing all of the good work you have done in the past
with a different touch. Because skin gets so dry you may want ot
give your loved one a massage with scented oils or their favorite
cream. Touch is an important sense and it has been shown that
people live happier with touch in their lives. Give hugs when
possible or as the person allows. Let that person know they are
still worth being touched by another human being. While doing the
massage or other personal care talk to your loved one. Talk about
of what the smell of the oil or cream reminds you. Talk about
your favorite memory with that person or a family member. Or talk
about life going on around you and your loved one. If the person
can tolerate it, you might want to play music that they have
enjoyed in the past as well. Another activity you may want to do
is read an article out of their favorite magazine or book of
poetry. Read about something they used to enjoy doing or by a
favorite author. It could be about fishing, auto care, gardening,
the latest styles from Paris, whatever that person used to enjoy
knowing about. You may only be able to do this for 15 minutes at
a time but it is fifeteen minutes of shared time. It is important
to maintain good hygiene and movement as much as possible. If
your loved one is beddridden, make sure to change their position every
two hours to prevent pressure sores from occuring. Use
cleansing products on redden areas to prevent skin tears. Try to
do range of motion exercises (as the person is able to tolerate)
to keep limbs and extremities from being too contracted. Use pads
and pillows to raise limbs or to separate knees. Now is also the
time to make final plans if they have not already been made. If a
power of attorney for health care was not done ahead of time, it
is up to the family to make decisions about medical treatment
(including g-tube placement and a "do not resuccitate"
order), home health services that are needed, and possible use of
a hospice. Your loved one's doctor can help put all of this in
place when it is discussed with him or her. And as hard as it may
be, the family will also need to consider funeral arrangements.
Take the time to write it down while thoughts are fresh in your
mind, before being overcrowded by grief and loss. Do not forget
to take time for yourself. Caregivers need to take breaks, too.
Take the time to go for a walk or read a book or do whatever it
is you enjoy. You need those times in order to regroup your
senses and continue to be a good caretaker. Take full advantage
of home health or day center or family members who want to give
you a break. Not all day center can handle people in the end
stage and you may want to consider using hospice instead. As much
as it is the last and final days, try to make each day a good day
for you and your loved one. Be loving, be playful, be the best
caregiver that you can be for that person. I know that if they
could speak they would say "Thank You".Written by SewingBabe

Thrive's Health Advocacy Workshop Week 4: PREPARING FOR THE END

MARY MEYER:Welcome to WEEK FOUR of thrive's health advocacy workshop!
Tonight's topic is, PREPARING FOR THE END: From living wills to
medical powers of attorney. I'm Mary Meyer, the program director
at Choice in Dying, a nonprofit organization that is dedicated to
fostering communication about complex end-of-life decisions. I
have produced several educational tools, including question and
answer booklets for patient and their families on end-of-life
decision-making, and "Advance Directives and Public
Education," a manual for institutional caregivers. I am also
an editor for Choice in Dying's award-winning newsletter,
Choices. I'm happy to be here tonight to answer your questions.

USER 1:considered a legal What is document that would qualify as
a "living will?"

MARY MEYER:known as an In most states,
a living will is also instruction directive because it gives
specific instructions about care at the end of life. In most
states it requires two witnesses to make it a valid legal
document. Also, in most states, the witnesses should not be
related or entitled to the person's estate or be part of their
medical team -- but that varies from state to state. In most
states, they do NOT have to be notarized. I'd like to distinguish
the difference between a living will and a medical power of
attorney: A living will gives instructions. A medical power of
attorney appoints a person that you trust to make decisions on
your behalf if you are not able to make them yourself. In
general, this allows for more flexible decision-making because
your medical power of attorney can make decisions about
situations that you couldn't anticipate and they can be an
advocate to see that your wishes are carried out.

USER 1:member and your friends -- who you would leave What if there is no
family responsible for this -- lives far away?

MARY MEYER:appoint someone who lives far away because they You can still can confer
with doctors and other medical personnel by telephone. You would
need to be sure that your doctor put your agent's name and number
in your records. The other thing, your agent needs to know what
your wishes, in fact, are. You need to really talk to them
honestly and openly -- and more than once about how you feel
about the use of aggressive life support systems. Particularly if
you have a terminal, or are suffering from, an irreversible
disease or condition. If your agent doesn't know your decision he
or she may not be able to make a decision. Your living will is
another way to let them know your wishes. But you need STILL to
talk with them so that they understand what you had in mind when
you prepared it. Terms like "no heroic measures" mean
very different things to different people, so you need to explain
what that would mean to you. You need to talk about the quality
of life that's important to you. If you had a serious stroke and
suffered brain damage and could no longer recognize people but
were otherwise content or seemed to be reasonably happy, how
aggressively would you want life support that would keep you
alive in that condition? People view this very differently and
you cannot assume that someone you are very close to will feel
the same way about it. These documents are TOOLS to aid
communication -- they cannot substitute for it.

USER 1: Wow... thank you. Never thought of things in that manner!

THRV Dev:wondering if the person you chose as I was your agent is NOT
a relative or related by marriage, does it make it less likely to
be followed?

MARY MEYER: The answer is no. One of the reasons that
medical powers of attorney are so important is that it
ensures that the person you want to make decisions for you has
the legal authority to do so. Many people will choose someone who
is not necessarily related or not their closest relative. In
formal laws that governs decision making -- doctors typically
look to the closest next of kin. Now, many people would not want
that person to be the one to make decisions for them -- this can
be particularly true for gay couples or couples who are not
married. In these cases, the person who may in fact be closest to
the patient may be blocked from any decision making unless they
have been formally appointed as the decision maker.

USER 2: MARY MEYER: Next of What can someone do to ensure that their organs
are donated? kin have to consent to organ donation. Therefore,
you can do organ donor cards or even write it in your living will
as a guide, but unless your next of kin consents, they will not
be taken. So the most important thing is that your next of kin or
family know your wishes to be an organ donor and will follow your
wishes. If the family objects, the organs will not be taken. You
might want to call one of the organ banks for more information on
that.

THRV Dev: Do you need the specific form or can you type one
up and notarize it?

MARY MEYER:the state specific form. A It's safest to
use written statement would still be important legal
evidence of your wishes, but if your state has any particular
requirements that you have not met in preparing your form, it
will not be viewed as "binding." You can supplement the
state specific form with your statement of wishes written out in
letter form. But having said this, any written statement would be
better than doing nothing. Because it is important evidence of
your wishes if that were needed. You can get free state specific
forms by visiting Choice in Dying's Website:
http://www.choices.org/ Or for more information, please call
CHOICE IN DYING at 800-989-WILL (800-989-9455).

THRV Dev:to know how I can have Yes, I wanted my partner, to whom I am not
married, carry out my wishes about organ donation? I thought by
having her listed on my durable power of attorney for health care
that would protect me. I even have a donor card. My next of kin
is my 9 year old daughter.

MARY MEYER:organization. I have been told by It may. I would check with an
organ donation representatives of organ donor groups that the family can be key
regardless of what you have in writing. It sounds like if your
partner is your legal representative, then that may cover you if
there is no one who would strenuously object. But again you
should check with the appropriate information, this is not my
expertise.

USER 1: Where is the best place to keep these
documents -- besides giving a copy to my agent -- where it can be
easily obtained?

MARY MEYER: You want to keep the original in a
safe but accessible place -- NOT a safe deposit box. Give
photocopies to your agent, alternate agent, physician, for your
medical records, and for anyone else you want to know about it.
But you always want to keep the original yourself. You can tell
them where to find it. But the hospital or physician can work
with a photocopy. The reason they need to know where the original
is kept is that if someone suggested that you changed your mind
or destroyed the original or invalidated in some way then it
might be important to have the original produced. But usually a
photocopy is enough.

USER 2:old cover themselves in the same way as Can someone less than 18 years
an adult?

MARY MEYER:prepare an advance directive but you need to Some states permit
emancipated minors to check the individual state law in one or two
states parents can make advance directives on behalf of minors. You
can call Choice in Dying if you need to know which states. I wanted
to address here a question I get very often: What if you don't
have anyone to appoint as your agent? In this situation, it is
very important that you prepare a living will. Take your living
will to your physician and discuss it with him or her. If you
have clergy, a social worker, anyone who might in some way be
involved in your health care, let them have a copy of it and talk
to them about what you have in mind. Also keep a copy of this
document where it would be easily accessed. You will be depending
on others to implement your wishes so it's particularly important
that your medical providers know your wishes and are committed to
honoring them.

THRV Dev:of time?

MARY MEYER: I don't think any
states Do these documents expire over a certain period now have
an expiration date. But look on your form -- it would be on the
form if there was an expiration date. I believe most states have
eliminated that. You can yourself designate a time when it ceases
to be valid if you wish to.

USER 1: Out of curiosity, are the
forms that are sold at office supply stores really valid and helpful?

MARY MEYER: If they follow the state statute. Many
hospitals also make them available and one would assume that they
will follow the state law.

USER 1:MARY MEYER: A hospital doesn't
have to make them available, I never knew the hospital. Thanks!
but many do.

THRV Dev:Jan. of 1993 I believe, anyone who was
admitted to the hospital In California, starting in was required
to be informed of their right to have a living will. Do other
states have this requirement?

MARY MEYER: In 1991, federal
legislation called, the Patient Self Determination Act was
implemented. This requires any institution that receives Medicaid
and Medicare funds -- such as hospitals, nursing homes, HMOs --
to tell people upon admission about their rights under state law
to prepare advance directives and then they have to document in
the chart whether or not the patient has one. So in every state
this would be true.

THRV Dev: Ah, I see now.

MARY MEYER: The law
was passed to educate both the public and the providers about
patient's rights in hopes that this would improve decision making
in difficult end of life situations. Good question.

MARY MEYER: I
have another question I want to bring up that gets asked a lot:
Who will make decisions for me if I do not have an advanced
directive and can't speak for myself? And the answer to this
depends in part on the decisions that need to be made and on
state law. In general, family or next of kin are looked to for
consent to treatment if the patient can't consent. However, under
some state laws, the family cannot withdraw treatment unless
there is an advance directive or other clear evidence of the
patient's wishes. That's why it's particularly important to have
advanced directives if you are concerned about receiving unwanted
treatment if you are irreversibly ill.

USER 3:What happens if a doctor does not follow an advance directive?
Or refuses to follow an advanced directive?

MARY MEYER: This is one reason to have a
health care agent because the agent can be your advocate. The
agent can fire the doctor. The agent can go to the
administration. In extreme cases, the agent can seek legal
counsel on your behalf. Some doctors are reluctant to follow
patient's wishes -- particularly if it involves withholding or
withdrawing treatments. So your agent also needs to be someone
who can be assertive with the providers if necessary. That brings
up a great point. Here are some things to think about in
appointing a health care agent: First the person needs to be
someone you trust and who is willing to be your agent. You should
never appoint an agent before asking. Make sure they are willing
to accept that responsibility. Sometimes, someone you want to
appoint will tell you that even though they would want to honor
your wishes, they might personally feel unable to direct the
treatment to be stopped -- even if they knew you wanted it to be
stopped. There may also be practical considerations on whom you
want to appoint. One person may be geographically more
conveniently located. A person may have professional experience
that may make them more easily able to cope with the situation.
If a person is easily overwhelmed by authority -- particularly by
medical care providers -- they might not be a good agent. The
most important thing is to have a frank talk with that person.
Many people might feel honored to be asked to serve as your agent
even if it would be difficult for them. To be someone's agent is
to offer or provide a wonderful gift of caring. Both asking
someone to be an agent and accepting that responsibility says an
enormous amount for how we care for each other. We're nearing the
end of the show... One last word: These decisions may be
difficult to bring up, but they are an opportunity to talk about
issues that of great importance for you and your loved ones.
People often avoid these conversations, but preparing the forms
provides an opening for beginning these discussions about end of
life concerns. Many people have reported to us how grateful they
were that their loved ones had relieved them of the anxiety of
not knowing what they would want done when they were at the end
of life. Even though the discussion was hard, it spared those who
had to make decisions a great deal of anguish. Once again: For
more information, please call CHOICE IN DYING at 800-989-WILL
(800-989-9455) or visit the Web site at: http://www.choices.org/
Thanks for all the great questions! (c) 1997 THRIVE

Happenings

Hope all is well
with you. I wanted to drop you a note and let you know that the
Alzheimer's group on the Better Health website has started (about
a month ago now) on Thursday nights at 9PM ET at
http://www.betterhealth.com (click on the Chat button, then
click on the Weekly schedule and find the chat on the schedule,
click on the hyperlink). I also wanted to let you know that if
you want, now that we have a group on the website, I'd be
thrilled if you would announce your newsletter on the Better
Health Web message boards, as well as the AOL groups, so that the
members of the website who belong to AOL can also attend the AOL
chats. I've noticed a growing number of AOL members attending the
chats on the website, and I think there is an audience that can
benefit. Could you add a "Blurb" in The Ribbon about
the Web Chat, for those members on the mailing list that may not
be able to attend the AOL chats because they don't belong to AOL?
Thanks a bunch! And thanks for keeping me on the mailing
list--you guys are doing a FABULOUS JOB! Hugs and love, Meghan

New Research Highlights Effects of Aricept(R) Donepezil HCL) on Functional
Brain Activity of Alzheimer's PatientsMINNEAPOLIS, April 29 /PRNewswire/ -- PET scanning
(positron emission tomography), a brain-imaging technique, is
giving Alzheimer's disease specialists a visualization of the
activity of ARICEPT(R) (donepezil HCL) tablets in the brain. In a
new brain-imaging study presented at the 50th annual meeting of
the American Academy of Neurology (AAN), researchers have shown
the effect of the medication on functional brain activity.
"Through results of this study, which imaged the brains of
Alzheimer's patients during ARICEPT(R) treatment, physicians can
obtain a more concrete impression of the drug's impact on
functional brain activity," said Larry E. Tune, M.D., lead
investigator of a PET study performed at Emory University and
presented at AAN. Dr. Tune is a professor of psychiatry at the
Emory Center on Aging in Atlanta and chief of Geriatric
Psychiatry at Wesley Woods Hospital in Atlanta. PET is a
technique to measure the functional activity of the brain, such
as cerebral glucose metabolism (the brain's ability to utilize
glucose). PET uses radioactively labeled tracers to provide
detailed information about functional brain activity. This
technique permits estimates of cerebral glucose metabolism in
whole sections or in regions of interest in the brain. PET
studies have shown that a reduction in cerebral glucose
metabolism is linked with progression of Alzheimer-type dementia.
Cholinesterase inhibitors previously have been reported to
increase brain glucose metabolism. The new PET study data
suggests retention of cerebral glucose metabolism in patients
with mild-to-moderate Alzheimer's disease treated with ARICEPT(R)
compared to placebo-treated patients. Over the course of the
24-week, double-blind study, researchers used PET to measure the
cerebral glucose metabolism of patients with mild-to-moderate
Alzheimer's disease taking ARICEPT(R) 10 mg. tablets once-a-day
compared to patients taking placebo. At the close of this study,
ARICEPT(R)-treated patients showed no apparent changes in global
functional brain activity from baseline (-0.5 percent), as
measured by cerebral glucose metabolism. In contrast,
placebo-treated patients experienced a decline from baseline at
week 24 of 9-10 percent in global functional brain activity -- as
measured by cerebral glucose metabolism. The study was not
powered to show a correlation, if any, between preservation of
glucose metabolism and cognitive performance. According to Dr.
Tune, data analysis from this PET study indicates significant
preservation of global brain glucose metabolic activity for those
patients treated with ARICEPT(R) compared to those treated with
placebo. To date, more than 400,000 people in the United States
have begun ARICEPT(R) therapy, a total of 55 million patient
days. ARICEPT(R) is a reversible inhibitor of
acetylcholinesterase, an enzyme found in the central nervous
system that breaks down acetylcholine. Acetylcholine, a substance
in the brain that is vital for nerve cell communication, is an
important neurotransmitter involved with memory and cognition.
ARICEPT(R) is convenient -- dosed once-a-day. In controlled
clinical trials, both the once-daily 5-mg dose and the once-daily
10-mg dose have been shown to be effective. Some patients might
receive additional benefit from the 10-mg dose after four to six
weeks of 5-mg once-daily therapy. The drug's most common side
effects include nausea, diarrhea, insomnia, vomiting, muscle
cramps, fatigue and anorexia. In clinical studies, these effects
were often mild, and went away with continued treatment. People
at risk for ulcers should be checked often by a doctor when
taking ARICEPT(R). Also, syncopal episodes have been reported in
association with the use of ARICEPT(R). ARICEPT(R) is not
associated with a risk of liver damage. Full prescribing
information is available upon request. SOURCE Pfizer Inc; Eisai
Inc.

In Passing: Those We Must Remember

Forwarded from BHostRidl... TripTwenty, wishes to be removed from
the mailing list. His mother passed away a week
ago................he and I both say thanks to you guys for the
newsletter.

From DrMOM1955 Some of you met my best friend and ex
Sis-in-law, (Sha3711) in the Caring for Elderly Loved Ones
Support Group. Her mother passed away at her home on June 4.

Email, email, we get
email

From eswint@aims.edu I just want to join in and say how much
I enjoy your newsletters. How much they have helped me. I can't
remember which one it was, and I accidentally deleted it before I
could print it, but by using the newsletter describing what stage
my mother is in, I think she is in the Stage V. And that is why
I'm writing. Could you email to me the newsletter that described
the stages of AD? If it weren't for my friends on the Internet, I
would be lost. I still remember when the doctor first told us
that Mom had AD. She said "Your Mom has AD. Come back in 6
months and join a support group." I was definitely
disappointed in any help I thought I'd get from the doctor. This
newsletter has helped me the most. We have support groups in my
town the second Tuesday of each month, and so far I haven't made
it to a one of them. But the group leader leaves me messages and
sends me information and I hope to be able to go to the next
meeting. Mom is living in a small independent living facility. I
visit her daily. Every day there's a new challenge. The longest
one we've been dealing with is her paranoia. Some of it would be
funny if it wasn't so sad. Well, I've rambled too long. Thanks
again. God bless you. Elsa

From Mar rob 1 Thank you for the newsletter...the
problem is that my mother doesn't think there is anything wrong
with her. My brother has been here 10days--he is wonderful. I am
here all of the time and always wrong. My brother understands--my
mother does not. We leave this woman (82) alone until she makes a
mistake that will put her in the hospital ???? I guess. She
thinks nothing is wrong and certainly wouldn't think of living
anywhere but her home..Leave her?? Her doctor said he would have
to sedate her if we tried to take her out (to keep her
controllable) She would have noone live with her. Any comment???
Thanks! M.

That's That's all we have room for this
time. Please remember that articles or email you send may be
saved for a future issue. If we put too much in we have a problem
getting the newsletter to email.